I have been thinking about Gabriel’s first seizure a lot the last couple weeks. Amazed, that it has been six months since Super Bowl Sunday. That day is forever etched in my mind. Gabriel was holding a purple dry erase marker and standing by his easel when he called out “Mommy”, fell on his bottom, tried to stand back up, then fell down again shaking. What I would give for the first prognosis of ” just a febrile seizure, nothing to worry about, may never happen again” to have been true.

The last couple days have proven, once again, that we are in the fact fighting, “The Beast” that is doose syndrome. G has been having tonic clonic seizures (grand mal) every morning around 6 for the last 4 nights, last night he had one of the worst we have seen in months at 3 a.m and it was 5 minutes long.  Today he had tonic clonic, and small drops as well 2 seizures with small tremors during which he seemed to have some awareness. He also had a few seconds where his speech was gone (this is one the hardest things for us, especially his daddy) It is quite disheartening after a long good streak to be back to what feels like square one.

We have his 3 month diet follow up appointment on Wednesday. A month ago we were very optimistic that we would be totally seizure free by now and get to start pulling meds. Now we have no idea where things are going or what the next line of treatment will be. Gabriel continues to be a very reluctant eater this week. We had to syringe butter again a few days when he ate only the cheese portion of his meal.

When I wrote the title for this blog a song called  “healing begins” popped into my head. So Looked up the lyrics:

This is where the healing begins, oh
This is where the healing starts
When you come to where you’re broken within
The light meets the dark
The light meets the dark

Not that Chuck and I haven’t both been totally broken within 100 times during this process, but this particular set back is hitting us really hard. It is not just a physical healing I am praying for. I am praying for a healing of my broken heart, my husbands broken heart and my precious baby’s brain (being a child his heart still seems about perfect!).

Here is a youtube link to the song for anyone interested (thanks again for joining in  this blog ride that functions as a form of therapy for me).

http://www.youtube.com/watch?v=SpjUIq7ahrQ

While, 4 is a fairly low number, it is our favorite number today. Gabriel is currently 4 days seizure free! We are especially thankful because he has been a very resistant eater the last couple days. He only ate about 800 calories today and he is supposed to have 1050 (Isn’t it ridiculous that i know the number of calories my 3 year old ate?)

Like many families, we are gearing up for school to start. This fall, Chuck will teaching as a graduate teaching assistant and taking classes at KU, I will be teaching preschool 2 days a week and Gabriel will be going to preschool 3 days a week. We are all excited about the upcoming year.

We finally started potty training this week and G is rocking it! So far we haven’t left the house without a pull up but we have several weeks before school starts, and I think we’ll be good.

I keep trying new snacks for Gabriel to take to school. His school is nut free and finding Keto snacks without nuts is very tricky. He has been asking for cookies for weeks, I finally made him some and he wouldn’t touch them. Bummer! Hoping he will be more willing to try other new things soon.

We have an appointment with his epilespilogist next week and are hoping to his speech, physical and occupational therapies scheduled soon. I am slowly but surely learning how to manage the flow of parenting a child with special needs.

Ugh! I hate to write this post because the last post was so happy….but life has ups and downs. Gabriel make it 9 days and 18 hours between seizures. He had one small drop seizure late Friday morning and a 4 minute grand mal (tonic clonic) early this morning 🙁 Super Bummer. We are staying optimistic and hoping the changes we made before vacation kick back in.

In happy news we had started potty training before the seizure on Friday (I kept waiting until he had a good seizure free stretch to start this new possible stress-or) and he is doing great! He gets a prize everytime he is successful. In 3 days he has earned 14 prizes! I am excited to go to the Dollar Store tomorrow and restock the prize box!

Our computer got infected by a virus before vacation, so we have been dealing with hacked bank accounts and rebooting the laptop so I have not been able to blog as much. Once the laptop is up and running I will write a blog about what we think may been causing the issues. (hee hee teaser!)

Last Tuesday G had 10 seizures, it was the 9th or 10th straight day of seizures and he had stitches in his chin.  Today we are enjoying a family vacation in Branson!

Gabriel is 5 days seizure free as I type and we are all enjoying our time away from home!  We are incredibly greatful for generous and kind family friends, who shared their time share points, enabling to take a vacation! My Mom and Dad got to come with us, so we are enjoying a combination of fun outings and rest time!

I am so glad we came. Last week was really tough and I kept thinking we were crazy trying to take a trip with Gabriel having drop seizures everyday. We figured, we would try the trip and could come home early if we needed to.  I literally thought, “Well at least if he has a drop seizure during the car ride he can’t fall and get hurt”

Our lodging is beautiful and huge! We have 2 adjoining units, each with a kitchen, 2 bathrooms, HUGE jacuzzi tubs and tons of space. Gabriel’s favorite thing is the corded phone.

He picks up the phone 10 -20 times a day…says “Hello, Hello”, “How you doing?” etc.  It really is the simple things!

We have not made him wear his helmet every day since he is doing so well. But we do bring it with us and hook it onto his backpack.  Apparently he was missing his helmet during mini golf… we turned around and he was wearing it, froggy backpack still connected. 🙂

We hope that everyone reading this gets to have joy in their hearts today!

Woo hoo! We finally made it whole day without a seizure! We are hoping for another day tomorrow.

Gabriel cried last night when Chuck told him we would be going to the hospital in the morning…..He cried because he didn’t want to wait til morning! He wanted to go right then! Good thing he doesn’t mind it too because he got to go twice today. Once to get his stitches taken out and once to reseal the wound after it split back open. Sigh. He does so well with all the poking and prodding it blows my mind. I can tell he gets a little scared but he just powers through.

Sunday morning began with a literal bang, as Gabriel split his chin open on the train table at 6 a.m. We were at the ER by 7 waiting for stitches.

Gabriel was a complete and total trooper. The doctor and nurses all commented multiple times on how good he was. Truly, he did not move an inch or cry the whole time his was being stitched up. He ended up with 6 stitches in his chin. I think he got a couple extra for good measure since he was so well behaved.

He has now gone to the hos-ti-bal (as he calls it) so many times that he pretty much rolls in asking for the train sets. As a matter of fact the only tears he shed this morning where when we told him the trains had to stay to help other kids get better. 🙂

The rest of the day was pretty good. He bounced back quickly, talked and played with trains, enjoyed time celebrating his Papa’s birthday and playing Yahtzee with the grown ups.

We now have 2 follow up appointments this week. One on Tuesday with his neuro pyschologist to find out the results and action plan from our last visit and one on Thursday to get his stitches removed.

We have reluctantly bumped one of his meds up a bit at the doctors advice. We were hoping the Carnitin would help stop the seizures but there has been no change after several days.

The last several days have been tough. We went from 6 to 7 to 8 seizure free days, and now we are 10 straight days of seizures in. We were hoping to begin reducing meds and get him out of the fog and instead we are adding more.

We know that a breakthough is coming and remind ourselves it could be much worse.

In the meantime we try to soak up the good moments.

It has been a tough week without a lot of answers on the epilepsy front (I will write another blog about that soon) . In the midst of the pain, this week has been filled with amazing blessings including friends bringing meals, trimming trees,offerings lots of love and family spending time with G so mommy and Daddy could get things done.

On Wednesday night I found my uttering many prayers of thanks. I sat in our church’s sanctuary at the National Worship Leaders Conference feeling God’s loving arms embracing me.

I was there with my dear friend Jamie. Jamie and I, along with several other amazing women have, been spiritual sisters for years. We have been through many of life’s ups and downs together. Two summers ago, Jamie and her family were struck by a tragic low, when her younger sister had complications after surgery and was without air for an extend period of time. Naomi was left in need of 24/7 care. Currently she is unable to communicate or do anything on her own.

Simply being able to spend time with Jamie was an amazing blessing. As I sat next her, I was thinking that she was the perfect person to be attending this concert with.

The music was amazing! We heard a group from Ireland called the Renfro collective (I think), then Paul Baloche (Amy Grant, Michael W Smith, etc have recorded his song…if you listen to Christian music you know his works even if you don’t know his name)……AMAZING!!!!

But for me at least the best part was between the sets. You know the time, when someone comes out, and talks a while so the stage can be reset? Normally, I would use this time to tune out, check my phone, or go to the bathroom. So glad I did not on Wednesday.

Our speaker recounted a story from a Christian event he had hosted years before. He was in the front row, next to a man and his teenage son. The son, who was in a wheelchair, had been injured in a football accident. He had lost his sight, his speech and almost all mobility, except for that in one arm.

Our speaker told of an entire crowd of men standing to sing “All Hail The Power of Jesus Name”. As the crowd sang, the father stood in front of his son, pulled him up into a hug and sang the words over his child. As he sang, the boy burst out in a huge smile and with much effort lifted his one working arm unto his father’s shoulder.

This story in and of it self was amazing! A picture of a fathers unconditional love, a child,who had survived tragedy, expressing joy in the presence of God. A picture of heaven when the boys body will longer limit him.

Then our conference speaker continued. He said the experience gave him a taste of heaven and reminded him of a bible verse. He opened his bible and began to read: Zephaniah 3:17
The Lord your God is with you,
the Mighty Warrior who saves.
He will take great delight in you;
He will quiet you with his love,
He will rejoice over you with singing.”

This is MY Favorite bible verse! It is one that Jamie and I (along with our other girls) had shared and prayed for each other for years! Needless to say, I was a great big sobbing baby.
I was thanking God for reminding me: 1. He loves me 2. He sees me. 3. HE is mighty to save 4. He delights in me (and my boy) and 5. He rejoices over me (and my boy) with singing!

My prayers for Naomi, remain unceasing, my hope is that she will be able to be complete again here on earth and that in meantime, in her healing process, that she will experience the JOY of the heavenly father singing over her.

My prayer for my own boy is that the seizures will cease and until, they do Chuck and I will embody God’s perfect love for him, as our family lives in God’s mighty power and grace.

We had a bit of a rough day today.  At least 8 seizures that we documented, I’m guessing we were probably at 10-12 all told.  Gabriel and I were watching some online worship music and jamming out and I had the camera running to catch him dancing.  I didn’t get much of the dancing but I did catch a Drop seizure on camera for the first time quite by accident. As you will note he starts off just watching the computer and playing with his truck then all the sudden his hands go up his head bobs down and he kind of crashes sideways to the ground.  This one was fairly mild.  He pops right back up, but then a few seconds later lays down and moves his head back and forth.  Basically these are generalized seizures, they kind of temporarily scramble his brain.  Usually (though he didn’t this time), he comes up crying and mad.  They all have a cumulative effect and the more we see, the less he can speak clearly which is the hardest part. I took the music out with some youtube wiz bang and dropped in a free version of one of his favorite songs about Jesus: Jesus Loves Me.  So appropriate given the line, “Little ones to him belong, they are weak, but he is strong”  Be strong Jesus, we want you to kick some doose syndrome butt!

Chuck

P.S.  One tip for watching – close any ad popups.  The seizure happens fast at the beginning of the clip, you might have to close the ads and then go back and start it again to see it.

If you know our typical pattern Tuesdays seem to be bad days..not so this week. Monday was really tough but today has been much better. Only 1 seizure and not until 8 o’clock tonight.

We talked to G’s doctors and they added caritine (another pill) …it is something that naturally occurs in the body and is necessary for fat to be metabolized for energy. The hope is for it grab every little fat Gabriel is ingesting and get it to his brain to stop the seizures!

I was able to use a ToysRus gift card, that mysteriously showed up in the mail a couple months ago, to surprise Gabriel with his own garbage truck! HE LOVES it! He played with it for hours today. Before bed he made a point of stating, “My new truck, not go bye bye”. We assured him it will be here to play with in the morning.

We are praising God for a better day today. Again, I find myself welling up with tears of thanksgiving for the amazing people in our lives who offer prayers, make phone calls, schedule playdates and just in general support our weary souls. God is using you to carry us through.

I was so excited that Gabriel didn’t have a big seizure in the middle of the night like he had the last 3 nights. Now I find myself wishing he had just had the 1 in the middle of the night instead of the craziness we had today. 🙁

I think we are ready to say that has has offically developed a new kind of seizure….. fan…freaking….tastic ;( He has 2 episodes that fit the description of complex absence seizures. 1 last night and 1 this morning. He also had 1 gran mal, a partial slow drop and a full backwards fall with head slam on hardwood floors drop today.

He has also learned to try and spit out whatever medicine remains in his mouth after we syringe it in him. Seriously….I hate it! We literally have to sit on top of him and force his mouth open just to get it in.

Days like today are hard when we are working so hard to manage the seizures and he still needs medicine and he still needs meals for tomorrow. My mom was able to come down and spend some time with me this afternoon since Chuck has school and or work late everynight this week.

Asking for prayer for strength and answers to get us back to days without seizures.